Piger med ADHD - Et kvalitativt studie om trivsel og diagnosticeringsproces belyst gennem forældrebesvarelser

Abstract

This Master’s thesis deals with the topic of Attention Deficit Hyperactivity Disorder in girls and seeks to shed light upon a research area within the social sciences which is severely lacking. There are reasons to believe that many girls and women who have ADHD go unnoticed in schools and other systems of society; And that they are thereby potentially underrepresented in statistics, underdiagnosed and to some degree misdiagnosed with other disorders due to their effective masking of ADHD-related symptoms in social situations. We have previously (in 2021) produced a narrative literature review focusing on well-being and learning in school-settings in regard to girls with ADHD and based on this we find it relevant and necessary to further investigate this research area; This time focusing on the diagnostic process related to and the well-being of girls with ADHD as experienced and described by their parents. Our interest in the diagnostic process stems from articles which point to problems within the public healthcare system in Denmark in terms of the processes related to the referral, examination, and clinical assessment of mental disorders. Diagnoses and diagnostic processes are also highly topical subjects due to the forthcoming clinical implementations of the ICD-11 diagnostic manual from the World Health Organization in the year of 2022 which includes changes to the diagnostic criteria of the disorder internationally known as ADHD but until recently classified as Hyperkinetic Disorder within the ICD-system. These points of interest have inspired the following problem formulation: How can parental survey responses elucidate the diagnostic process in regards to ADHD in girls as well as the implications of the disorder in terms of their well-being? Taking a phenomenological approach, we have produced and conducted an online survey addressed to parents of girls with ADHD using SurveyXact, providing the participants with the option of providing qualitative answers to the survey questions. The survey responses from 133 anonymous participants reached through ADHDrelated Facebook groups have been analyzed using the method of a descriptive phenomenological analysis. Our general conclusions are that symptoms of ADHD can greatly affect the well-being of girls and that in many cases the poor well-being of the girls in question was improved after receiving an ADHD diagnosis. Also, that the diagnostic process was described by the participants in both negative, positive and neutral terms. Among descriptions of positive experiences, participants described the process as professional and expedient and that they as parents felt heard and taken seriously. Among negative descriptions related to the diagnostic process, participants described long waiting time in the public health care system (which in several cases affected the well-being of the girls negatively as their well-being worsened with time), disagreements between parents and professionals as to the presence or degree of the participants’ daughters’ symptoms as well as descriptions of feeling that there is a lack of available public information about being a parent of a girl with ADHD. Prior to producing the survey, we produced four hypotheses. The first hypothesis was that we expected to see relatively late ages of diagnosis of ADHD among the participants’ daughters compared to the average age of diagnosis related to ADHD in boys. In fact, 81.2 % of the participants reported that their daughters were diagnosed at the age of nine years or older, which is later than the average age of diagnosis across genders. The second hypothesis was that we expected many examples of girls being “diagnosed” with ADD, i.e., Attention Deficit Disorder, which is in fact not possible using the ICD-10 diagnostic manual. However, 62.41 % of the participants reported that they had been told that their daughter had been given the diagnosis of ADD and only 1.5 % reported that their daughters had been diagnosed with Hyperkinetic Disorder, which is the correct diagnostic term using the ICD-10 diagnostic manual. The third hypothesis was that we expected descriptions of negative experiences and difficulties related to the diagnostic process. Although the number of negative responses did not exceed the number of positive and neutral responses, we can conclude that we did receive numerous negative responses from the participants related to the process of receiving a diagnosis for their daughters. The fourth hypothesis was that we expected descriptions of the manifestation of ADHDsymptoms varying between different contexts such as in school vs. at home. We can conclude that the participants reported to a great extent that they have experienced variations in their daughter’s symptoms of ADHD depending on the context and situation. Further research is needed regarding ADHD in girls and women as well as in general and we have presented ideas as to what said research may focus on. We hope that further research may provide information that can contribute to better opportunities of identifying and helping people with Attention Deficit Hyperactivity Disorder however their symptoms may present themselves.

A master thesis from Aalborg University

Piger med ADHD - Et kvalitativt studie om trivsel og diagnosticeringsproces belyst gennem forældrebesvarelser

[Girls with ADHD - A qualitative study about well-being and the diagnostic process elucidated through parental survey responses]